Paul's Heart

Life As A Dad, And A Survivor

Opening Pandora’s Box

How often have you wanted to reply to the statement “I know how you feel” after explaining to someone about a traumatic issue or stressor that you are dealing with?  Or perhaps the old “You’ll be fine” or “You look great” evokes an attitude of “I was hoping that you would be different but you are just like the others.”?

Breast cancer has an entire month dedicated to awareness.  ALS (Lou Gehrig’s Disease) has chapters nationwide with multiple fundraisers to help fight its cause.  And yes, even the cancer that I had, Hodgkin’s Disease (also called Lymphoma) has the Leukemia & Lymphoma Society.  When it comes to the physiological part of the treatment and cure, our society is very good at using all efforts to bring about the cure.  While I cannot vouch for how patients are treated today, as a survivor from 1990, I was not prepared for the life I would live today.

Officially, I have lived over half of my life with cancer, in spite of cancer, because of cancer.  With no thorough protocol for following my case, only a magic number of “five years” was the only thing that I would pay attention to.  After five years, I would only see my oncologist once a year.  After five years, I could get health and life insurance.  After five years, I could think about applying for a new job without having to be questioned about my cancer patient.  At five years, I no longer had to worry about cancer anymore.  That chapter would be closed.

We have all seen the comic strip Peanuts when Lucy and Charlie Brown are playing with a football.  Lucy holds the football to encourage Charlie Brown to kick the ball, and as she always does, just as Charlie Brown approaches the ball, Lucy pulls the bull out of the way.  Charlie Brown kicks his leg through thin air so hard his other leg swings out from under him, with Charlie Brown landing flat on his back.  And in spite of Lucy promising him (every time) that she will not pull the football away, he falls for it every time, and the result is always the same.  We all know that is how it goes.  And we do not expect anything differently.

When I got diagnosed with my cancer over twenty years ago, everyone that knew me was shocked.  When I found out that my heart bypass surgery and that it was caused by the treatments I was exposed to from my cancer treatments, again, there was disbelief.  And again, a sudden onset of sepsis complicated with pneumonia due to an immune system compromised from losing my spleen as part the diagnostics of my Hodgkin’s Disease, many now wonder, how much more can I take or even how much more is there to go through?

All through my cancer journey I was pretty much on my own, partly by choice, the other part by everyone else’s fear of the C-word.  In remission since 1990, I concentrated my energies on recovery, and that magic fiver year mark.  In 1996 I purchased my first computer and in 1997 for whatever reason, started researching Hodgkin’s Disease.  Shortly thereafter, I found a support group on the internet that consisted of people who had survived cancer.  Some had just entered remission, and many, had been cured for decades.  Survivors on this site had battled a variety of cancers, some battled multiple cancers.  But then I realized something strange, but severe.  Many were also battling other health issues.  Health issues that were brought on by the treatments that they had gone through to beat their cancers.  I had some minor things that I had to live with such as some permanent hair loss and infertility, but nothing near as difficult as the subscribers on this list.  Soon I began to feel guilty because as each day passed, I got to continue to enjoy my remission, while others struggled and I no longer felt that I belonged.  I would disappear and reappear on that list annually just to say hello to those that I had become acquainted with.

But in 2008, “useless” memories would finally become valuable following my heart surgery.  Learning that the bypass was necessary due to radiation scarring from nearly twenty years earlier, I found myself dealing with doctors who had no real experience with long term cancer survivors or how to recgonize our side effects, or how to treat us when issues came up.  And then I appoached it, my Pandora’s Box.  I was home from the hospital one week later and reached out immediately to all those who had gone before me, those with whom I originally felt nothing in common, those who would know who I needed to see as a long term survivor.

And just as the bad can come with the good in opening Pandora’s Box, the same can be said for finding out what I should have known all along.  Protocol is now in place that had not been when I completed my treatments.  There is knowledge of long term side effects from radiation and chemotherapy exposure.  Three concerns remained, diagnostics of any other pending medical issues, the course of treatment or maintenance to follow to make sure that I get to see my daughters graduate and one day perhaps see grandchildren, and emotionally deal with and if possible, accept that hand that I was unknowingly dealt so many years ago.

So just as with Pandora’s Box, there is good and bad.  Several conditions have been discovered.  They cannot be reversed, but the hope is to slow the continued progress.  Issues with immediate consequences are trying to be prevented from occurring in spite of compromised conditions.  There is constant frequent and annual surveillance.  Most importantly, there are so many others like me, who are there to offer me their experience of “knowing what I am going through”.  But there is the counter to the good.  Sometimes there is an obsession with so much that is happening.  There are some in my life who feel by me paying so much attention to my health, that I might just be willing things to happen.  To prevent this from occuring, I frequently bury my feelings and worries so that no one has to worry.  I reach out to those who are in my shoes to give me balance, which many times does not happen, but without them, things would be so much worse.

There are so many survivors like me, only a small few actually know what is happening to them, and can get the care that they need.  For countless others, they spend every waking moment baffling doctors who do not ask the right questions, family that do not recall pertinent details of cancer’s past, and a patient who simply just wants to close the door on the cancer they once faced.  Out of a world with over 12 million survivors, only a small percentage get the attention and care that are needed.  If you were faced with your own Pandora’s Box, what would you do?  I know I am better off for having opened mine.

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